a family companion - palliative care
TRANSCRIPT
‘Sun shining o
n a tree lade
ned w
ith pink f o
wers’ b
y Nicholas, 7 years old
Paediatric Palliative Care
A Family Companion
‘Nurse’ by Georgia
A Family Companion
January 2018
Palliative Care Australia
P.O. Box 124
Fyshwick ACT 2609
T: 02 6232 0700
W: palliativecare.org.au
Acknowledgements
Palliative Care Australia has collaborated
with Paediatric Palliative Care
Australia and New Zealand to produce
A Family Companion.
A Family Companion is an updated
version of Journeys: Palliative Care for Children and Teenagers (2nd ed. 2010),
which brought together many
extraordinary parents, health professionals,
family members and carers to share their
personal experiences to help others.
Contents
‘Nurse’ by Georgia
2 Introduction2 How do I get more information?
4 What are my rights?
6 Diagnosis or recognition6 What is palliative care?
7 Who provides palliative care?
7 Your family
8 What are the treatment choices?
8 What are goals of care?
10 Ongoing care10 Where can my child be cared for?
12 Care plan
13 Symptom management
15 Family considerations and concerns
19 Family, friends and our community
22 End of life and bereavement22 What are our end-of-life care choices?
24 How do we talk to our children?
26 What can we do about memory making?
27 Does it help to do some funeral planning?
27 How do I know when the last hours or days are near?
28 What do I do after my child dies?
30 How will I respond?
32 How do I get bereavement support?
33 How do I readjust to my changed life?
35 Other Organisations and Support35 Parents
36 Children
Introduction
‘A Family Companion’ is designed for parents and carers of babies, children and young people with a life-limiting condition or illness. This resource aims to prepare you for the situations and challenges you may face with regards to your child’s illness.
The information seeks to support parents
and carers in their role as champions and
decision-makers for their child, with each
section exploring stages of your child’s
illness and what you might expect.
The resource is also helpful for extended
family members, close friends and your
support network to read and understand
the difficult issues that may arise after the
diagnosis or recognition that your child has a
life-limiting illness.
Additional resources on a range of topics
are available to further assist you and
your family. To access these resources
please visit palliativecare.org.au/children.
Throughout this resource, we refer to the
child or children as any age from before
birth up until 18 years of age.
A life-limiting illness is an illness with
no reasonable hope of cure and from
which babies, children or young people will
probably die. Throughout this resource,
the term life-limiting illness also includes
life-limiting conditions.
How do I get more information?Educating yourself about your child’s illness
is an important part of managing their care.
There may be a large amount of information
available about your child’s illness however
it is important to try and ensure that it
is reliable and relevant to your situation.
The best source of health information is your
child’s care team.
Speak to your child’s care team
Don’t be afraid to ask for more information.
Sometimes, your questions may not be
answered with absolute certainty, especially
if your child has a set of life-limiting
symptoms but not a complete diagnosis.
Even if there is uncertainty about your
child’s illness, you can expect to have
your questions answered honestly by your
care team.
2 Paediatric Palliative Care — A Family Companion
Some questions to consider asking your care
team include:
› What can I expect as my child’s
illness progresses?
› What can I expect from this treatment
or procedure?
› What can be done to keep my
child comfortable?
› How and where can my child
receive care?
› How are services provided after hours?
Other sources of health information
While health information can be
widely available, it may not be as reliable as
the information given to you by your care
team and other health care providers. It is
best to carefully assess other sources of
information as they may not be accurate and
can be dangerous or misleading.
Chatting with friends on social media sites
can be very helpful for social support,
however is no substitute for proper
medical advice. If you are interested in
learning more about a specific treatment
that you have heard or read about, you can
discuss the information with your care team
so that they can work with you to determine
the best treatment options available. If
you are interested in learning more about
what you have read in a scientific journal,
take a copy of the article with you when
you next talk to the care team so you
can discuss the information together.
You may consider fundraising through
your personal community. It is best to be
aware these efforts can introduce their own
stresses on you and your family.
Some questions to ask when searching for
additional information include:
› Who is providing the information?
» Are they qualified in health care?
In Australia, 16 health professions
groups are required to be registered
with a regulating National Board
(e.g. Medical Board of Australia).
You can check if someone is registered
on the Australian Health Practitioner
Regulation Agency (ahpra.gov.au).
» Or if they are a scientist, how many
articles have they published and
how often do other people refer to
their work?
› How up to date is the information?
› Is the information understandable or is it
full of unknown words?
› Are there links to other reliable sources?
› Is there a reason why a source is
promoting a particular product?
› Does the source discuss the benefits
and risks?
› Is there a way to contact the author?
For additional information please see the factsheet:
− Finding reliable information
3palliativecare.org.au/children
What are my rights?All children have the right to the best quality
of life. When they have a life-limiting illness,
they have the right to high-quality palliative
care to meet their needs.
This includes:
› Access to age appropriate palliative care
within the health care system
› Access to appropriate pain and symptom
management (including medications)
for all children
› Supporting all children and their families
to be able to live their lives to the best
of their ability for as long as possible
International Children’s Palliative Care Network, The ICPCN
Mumbai Declaration 2014.
What are my child’s rights?
In Australia, a child may be legally able to
make their own decisions about their care
from the age of 16, if they are capable to
do so. Each state has its own laws regarding
when a young person can make decisions,
however all young people should be
informed about their illness and involved in
decision-making according to their level of
capacity and willingness to be involved.
For a child younger than the legal age, as a
parent or a legally appointed guardian,
you are required to make decisions about
your child’s care.
What are my rights as a parent or a legally appointed guardian?
You have a right to be informed:
› To have questions answered honestly,
respectfully and as fully as possible
› To be given information in a way you
can completely understand with good
explanation of medical language, use of
interpreters and minimal jargon
› To seek further information or a second
opinion before making a decision
› To have access to other services that
may be helpful (e.g. social worker,
bereavement support)
You have a right to be involved
in decision-making:
› To participate in all discussions about
your child’s care
› To refuse or request treatment to the
extent permitted by law
› To choose someone else to make
decisions on behalf of you and
your family
› To have access to a professional
mediator — someone who will act as
a go-between you and your health
care team
› To be able to change your mind about
any aspect of your child’s care at
any time
You have a right to be heard:
› To be able to voice your opinions
and needs
› To have your opinions respected in a
calm and mindful manner
4 Paediatric Palliative Care — A Family Companion
› To be able to say no to things you are
not comfortable with
› To voice any issues or complaints about
your child’s care
You have a right to receive care in line with
your family’s needs:
› To have access to respite and other
services as required
› To have care adapted to include beliefs
and values according to your spiritual,
religious and cultural wishes
You have a right to receive care in a
professional and safe environment:
› To have all care provided in a capable
and professional manner
› To know the professional qualifications
of every member in your care team
You have a right to confidentiality:
› To have your privacy respected at
all times
› To have your child’s medical records
only given to those directly involved in
providing care
› To give permission to share your
child’s medical records and healthcare
information with other people
You have a right to decide the role you
play in the care of your child:
› To be your child’s voice
› To be involved in care decisions
› To decide without the pressure to
choose any specific option
Adapted from the Standards for Providing Quality Palliative
Care for all Australians, Palliative Care Australia 2018
How do I provide feedback?
It is important that you talk to the care
team about your experiences, expectations
and any issues regarding your child’s care.
The feedback you provide is not only
important to your child’s care but it is also
helpful to make improvements to services
for others families as well.
If you raise a concern about your child’s care,
you should receive a timely response from a
suitably skilled health professional or team.
It is important to note that the type of
response from the care team and/or health
service will depend on the nature of the
concern and the person who raised it.
If after speaking with your care coordinator
or another member of your child’s care team
you still feel that your concerns have not
been adequately addressed, there are other
avenues to provide feedback. You may wish
to speak to someone outside of your care
team or the health service should have a
complaints officer who you can speak to.
If you feel that the health service has not
addressed your concerns appropriately,
you can contact the Australian Health
Practitioner Regulation Agency or the
Health Commissioner or Ombudsman in
your state or territory.
5palliativecare.org.au/children
Diagnosis or recognition
This section introduces palliative care and provides an overview of treatment decision making and goals of care.
What is palliative care?Palliative care is not only about end-of-life
care. Sometimes it is also referred to
as comfort care, comfort treatment or
supportive care. It focuses on helping
children and families to live as well as
they can with a difficult illness.
Palliative care for children with a
life-limiting illness is an active and total
approach to care. From the time of diagnosis
until death, and beyond into bereavement,
palliative care includes physical, emotional,
social and spiritual care.
Palliative care focuses on improving quality
of life for the child, managing symptoms,
and providing support for the whole family.
Some children receive palliative care for
a short time, while others may receive
palliative care for many years.
It is common for children to receive
palliative care alongside medical
treatment aimed at a cure.
The timing of referral to a palliative care
team is your choice, however starting the
relationship early can result in improved
preparation for yourself and better support
for your child. Your primary team may
recommend referral to a palliative care team
to assist with your child’s care. The teams will
work together to provide the best care and
support for your child and family.
“I wish we had understood palliative
care better — we would’ve used it
more if we knew then what we know now.”
6 Paediatric Palliative Care — A Family Companion
Who provides palliative care?Palliative care is generally provided by a variety of health professionals and health care
providers working together in a care team. Each family will have a care coordinator in their
care team who is responsible for bringing together different health professionals to support
your child and family.
The care team will be different for each family, but may include many types of health care providers:
General Practitioner
PaediatricianFriends and community
Social Worker
Community nurses
Medical specialist
Hospital nurses
School
Children’s
outpatients
Children’s
ward
Allied health
professionals
Support
services
Spiritual
support
Local
pharmacy
Hospice
Child and family
therapists
Paediatric
pharmacist
Your Family
7palliativecare.org.au/children
What are the treatment choices?Every child, illness and family is different.
With the help of your care team, it is
important to learn about your child’s illness
and how it affects them. There may be
a variety of treatment choices available
for your child. It is worth noting that all
treatments require consideration of what
is involved, the possible benefits and risks
and whether the benefits outweigh the risks.
You may decide certain treatments are not
the best option for your child.
Gather as much information as you need
and take time before you make a decision.
It is important that you don’t feel alone with
decision-making and to speak with your
care team who can answer questions and
offer support.
Some therapies may not be recommended
as they may interfere with your child’s
treatment and/or increase side effects, or
be ineffective. Always talk to your care team
before commencing any therapies.
Participation in a clinical trial may be offered
by your care team. Trials undertaken by
large children’s hospitals are held to very
high standards and are offered when the
hospital has sufficient evidence there
may be a potential benefit of the trial.
Sometimes, ‘trials’ or experimental
therapies are offered by unqualified or
unregulated people so it is important
to check with your care team if you are
considering participation.
For additional information please see the factsheets:
− Finding reliable information − Decision making
What are goals of care?
How do we talk with our care team?
Goals of care refer to the overarching goal/s
everyone wants to achieve for your child.
In some cases this might be survival at all
costs or it might be a focus on comfort.
It may also be something in between where
families and the care team will try and find
the best balance between these two goals.
You will have an opportunity to talk about
your hopes, wishes and concerns for your
child and family, which will be central to the
planning process.
You will be supported to play an active role
in the care your child receives and to have a
say about how and where they are cared for.
It is important that your child’s and family’s
needs are reviewed regularly. If you feel you
need an earlier or later review, you can ask
your care coordinator.
When discussing goals of care, you can
expect the following:
› A good allocation of time for
open discussion
› A room to ensure privacy
› The staff to be respectful of your values,
wishes and concerns
› Someone with you to support you
› Written material to support
your discussion
› The opportunity to ask questions
› Availability of an interpreter
8 Paediatric Palliative Care — A Family Companion
How do we choose?
Care choices are made between you
and your care team as your child’s
illness progresses. These choices will also be
part of an end-of-life care plan and will be
different for every child.
Before you make care decisions it may be
helpful to consider the following:
› What are the most important things to
you and your child?
› If time was limited, what would make it
the best it could be?
› If possible, ask your child what are their
hopes and worries?
› What will be your child’s experience of
these decisions?
› How involved is your child able to be in
the decision-making process and is this
something they want to be included in?
What if we disagree?
Parents share the difficult task of making
decisions and planning care for their child,
however parents may not always agree
on what they want to do. If you have
different views, it may be helpful to speak
with a member of your care team who can
help answer questions and offer support.
How will people know about our decision?
Once important decisions are made,
it is essential that everyone involved or
likely to be involved in your child’s care
is informed. Many hospitals and palliative
care services have documents where these
decisions are recorded. These decisions
may be recorded in different documents,
for example in a care plan or an
Advance Care Directive. Decisions and plans
will need to be reviewed as your child’s
condition changes. If you have any questions
or concerns about the documentation
and/or how your decisions will be
communicated to those caring for your child,
speak with a member of your care team who
can help answer your questions.
For additional information please see the factsheet:
− Decision making
“We felt as long as we had some sense of control, we could handle most things.”
Artw
or
k by Z
oe
9palliativecare.org.au/children
Ongoing care
Where can my child be cared for?Children can be cared for in their home, in
hospital, or in a hospice where available.
As your child's illness progresses and
transport becomes difficult, your child
may spend time in more than one place.
Your care team will make arrangements so
the care provided reflects your choices.
You can change your mind about place of
care at any time during your child's illness.
Can I care for my child at home?
In the early stages of a life-limiting illness,
children will often be active and have
little discomfort. They are likely to be
at home, attending school and participating
in activities.
It may be possible for your child to be at
home with you throughout their illness.
Some of the benefits of home care
may include:
› Sick children are often happier in
their own space with their toys, pets
and family
› Your family can be together and be as
involved as they like in your child’s care
This section explores places of care, care planning, symptom management, family concerns and support from your family, friends and community.
› You may feel like you are better able to
provide support to the whole family
› Privacy and comfort are better in a
familiar environment
› You may feel more in control of your
child’s care
Speak to your care coordinator about
care and other support services that may
be provided in your home. The care and
support services offered to you will depend
on where you live, what your child’s care
needs are and the resources available.
Your family General Practitioner (GP) may
be a key member of the care team for you
at home.
Can we go to a hospital or children’s hospice?
A hospital or hospice provides full-time
care for your child and onsite access
to health professionals. These services
aim to meet the physical, emotional,
social and spiritual needs of children and
their families. Children’s hospices deliver
care in a child and family-friendly purpose
built building and offer a wide range of
support, which may include respite care,
transitional care between hospital and home
and for end-of-life care.
10 Paediatric Palliative Care — A Family Companion
You may choose to be in a familiar hospital
ward when your child is very unwell or
to attend a more local hospital if this can
be arranged.
Each hospital and hospice has its own set
of programs and arrangements. Talk to your
care team about your wishes and the option
that is right for your child and family. You can
also talk to them about personalising your
child's room in the hospital or hospice.
There are three children's hospices
in Australia:
› Bear Cottage Sydney, New South Wales
(02) 9976 8300
› Hummingbird House Brisbane, Queensland
(07) 3350 1563
› Very Special Kids
Melbourne, Victoria
(03) 9804 6222
What is Respite Care?
Taking breaks from caring for your child can
help you to care for yourself and your family,
these breaks are known as respite.
Respite can assist in recharging your energy
and can allow you to spend special time with
your other children, your partner and people
and activities which support you. There are
different types of respite care available,
some examples include:
› In-home care provided by
support workers
› Short-stay admission into a hospital,
hospice or disability respite centre
› Sibling programs like camps,
day programs and support groups
› Asking a trusted friend or family member
to spend some time with your child while
you take a break
Your care team can help you access in-home
and respite care services, if available.
The following suggested questions provide
a starting point for these discussions about
any worries or concerns you may have
regarding respite care.
› What options of respite care are
available to our family?
› Are there any services which might
provide access to a carer, nurse or
volunteer for in-home respite?
› Are there any services available to
provide night care?
› What is the cost of respite care and is
it covered under Medicare or private
health insurance?
› What happens if a longer break
is needed?
For additional information please see the factsheets:
− Child hospice services − Decision making − Where will my child will be cared for − Looking after yourself whilst caring − Supporting someone who is caring for a seriously ill child
− Contact list − Helping your partner
11palliativecare.org.au/children
Additional information is also available from: Carers Gateway (carersgateway.gov.au or 1800 422 737) — Carers Gateway is a national service funded by the Australian Government. Carers Gateway includes a website and phone service for carers to access practical information and support.
National Disability Insurance Scheme (NDIS) (ndis.gov.au or 1800 800 110) — the NDIS will provide all Australians under the age of 65 who have a permanent and significant disability with the reasonable and necessary supports they need to enjoy an ordinary life.
Care plan
How does someone know how to care for my child?
Caring for someone can be a rewarding
experience but it can also be exhausting,
especially as a child's illness progresses.
A care plan is a very helpful tool that
communicates your choices to those caring
for your child.
The care plan is based on the goals of care,
your child’s illness, your family lifestyle
and the needs of your child and family.
It communicates your choices and wishes to
those who are caring for your child. The care
team can assist you with developing a
comprehensive plan to suit your child’s
individual needs.
Your care plan may include:
› A basic medical history for new care
team members
› Instructions on routines, playing,
feeding, comforting and sleeping
› Photographs and diagrams to show
your child's preferred sleeping, lying,
seating or bathing position
› Helpful tips for solving problems
(e.g. if your child becomes restless)
› What to do and who to call in
an emergency
› Which situations are considered to be
an emergency
› Instructions for medicines and
symptom management
› How to involve and support any siblings
Depending on what works best for you and
your child, you may also consider:
› Developing a care plan for each place
of care (e.g. a home care plan and a
hospital care plan)
› Taking the care plan everywhere with
your child
You will need to revisit and update the
care plan as your child’s and family’s
needs change. Your care coordinator should
discuss and coordinate these changes
with you. If you are unsure whether your
child’s care plan needs reviewing, speak to
your care coordinator.
For additional information please see the factsheets:
− Decision making − Symptom management plan
12 Paediatric Palliative Care — A Family Companion
Symptom management
How do I make sure my child is comfortable?
With the right support and planning, your
child’s comfort can be well managed.
Your care team will help you to understand:
› The symptoms to expect with your child
› What to look for that shows they are
uncomfortable (e.g. facial expressions,
signs in their body)
› What you should do if any problems
arise including who to call for help
› How to use medicines correctly
and safely
Contact your care team if you have
any questions about your child's
symptom management, ensuring you have
the contact details of the individuals or
team/s who you can call at any time.
What can I do about managing my child’s pain?
Most parents worry about their child
suffering from pain, below are some
common signs of pain:
› Looking tense or stiff
› Frowning, moaning or crying
› Not feeling like eating
› Not feeling like joining in activities
› Being unusually quiet or cranky
› Irritation or restlessness
› Reluctance to move
The key to managing pain is making sure
you have your child's medications on hand
when you need them. This means having
medications with you, understanding how
and when to use them and giving them to
your child. The care team will assist you
in learning how to give your child their
medication and how to use any special
equipment needed. Children will often need
to have regular pain medication to prevent
pain from coming back. This will usually be
given at the same times each day as well
as some extra medication being available
if needed. These extra medications are often
known as “breakthrough doses”.
You will also need to know how long the
medication will take to work, how often to
give a dose, and how long they are likely to
work for the pain. Ask your team to write a
medication plan down for you. A medication
chart or simple diary in a notebook will also
help with recording the time and amount
of medication given. This can also help
your care team to work out the correct
medications and their dosage level needed
to improve your child’s pain management
as they can see how much you have needed
to use.
Other ways to manage pain include resting,
positioning, using ice packs or heat packs,
massage and distraction.
It is important that you know the common
side effects of your child's medications and
what to do if they experience side effects.
If you are concerned about the side effects
of certain medications or the effectiveness
in managing your child's pain, speak to your
care team.
13palliativecare.org.au/children
What do I do if my child is having trouble eating or drinking?
Illness can make eating and drinking difficult.
Talk to your care team if your child:
› Is unable to eat food or drink fluids
› Is eating with hesitation
› Has difficulty swallowing
› Is coughing
› Is choking or gagging
› Has no interest in food
Your care team can provide tips on
your child's body positioning and
food textures. You may also like to discuss
further assessment and the possibility of
feeding tubes.
What do I need to know about my child’s breathing?
Changes in breathing are common with
illnesses and whilst these may not make your
child uncomfortable, changes in breathing
can be difficult to watch.
If your child is having difficulty breathing,
speak to your care team as they may be able
to help with:
› Positioning
› Chest physiotherapy
› Managing saliva
› Medicines to ease feeling short of breath
› Relaxation techniques
› Access to fresh air or a fan
› Access to oxygen if it makes your child
feel better. Sometimes oxygen masks or
nose prongs can make a child feel worse.
How can I care for my child’s skin?
Illness can have an effect on your
child's skin because of poor circulation,
weight loss, decreased activity or other
illness-related factors. Protecting their skin
with cushioning, moisturising, massage
and regular position changes can help.
This can mean using special bed mattresses,
sheepskins, skin creams and dressings. If you
notice any changes or redness in your child’s
skin, let your care team know.
What can I do if my child is nauseous or vomiting?
The causes of nausea and vomiting are often
difficult to identify. Speak to your care team
so they can help you to identify if there is a
cause which can be avoided or managed.
Medication can help control nausea and your
care team can work with you to find the right
medication for your child and how best to
give this.
Sometimes, as children become more
unwell, they are less able to tolerate food
and drink and they may feel less hungry.
It may be necessary to reduce what they
are eating and drinking to avoid nausea
and vomiting.
Practical things that may help your
child include:
› Keeping smells down
› Mouth rinses
› Distraction
› Providing fresh air
› Using a fan
› Cool face washers
14 Paediatric Palliative Care — A Family Companion
What can I do if my child is constipated?
Constipation can cause extreme discomfort,
behaviour changes and nausea and may be
a result of:
› Medications
› Lack of physical activity
› Poor fluid and fibre intake
› Illness that causes slow bowel movement
The use of oral laxatives can be important
and may need to continue to prevent
constipation returning. Sometimes,
your child may also need an enema or
suppository to clear a blockage.
Make sure your child is as comfortable
as possible on the toilet or bedpan.
Comfort aids include:
› A padded seat
› A pillow to hug
› A foot stool to rest their feet on
It can be helpful to keep a record of your
child's bowel movements and give them
extra fluids if possible. Gentle clockwise
stomach massage may also help.
What can I do if my child has seizures?
Children with a neurological disorder,
brain tumour or epilepsy may be at risk
of seizures and your child may already be
taking medications to prevent seizures.
If your child is prone to seizures or there’s
a possibility they could develop them,
you should have extra medication on
hand to use if needed. Your care team can
help you with medication, and provide a
written plan of what to do.
For additional information please see the factsheets:
− Care team contact list − Symptom management plan
Family considerations and concerns
How can I ensure my spiritual, religious and cultural wishes are respected?
If English is not your first language and you
need support to help you talk about your
wishes or cultural preferences, ask a member
of the care for an interpreter. You could also
ask a community leader to come and talk to
the care team, to help explain your cultural
background and how this may affect your
wishes for your child’s care.
Every family is unique in their spirituality,
religion, culture, beliefs and values.
Whatever your wishes for your child’s care,
these should be respected by the team
supporting you and your child and the team
should work to accommodate your wishes as
closely as possible. Whilst the care team will
often be aware of different cultural, religious
and spiritual preferences, it may be helpful
to speak to the team, or a member of the
team about your specific wishes to avoid
potential misunderstandings.
Every family is unique in their
spirituality, religion, culture, beliefs and values.
15palliativecare.org.au/children
‘Nurse’ by Charles
Is it normal for us to experience feelings of loss and grief?
Families often experience feelings of
grief and loss at their child's diagnosis
and/or prognosis. This may include
struggling with the diagnosis, feeling a loss
of future hopes, dreams and worries about
what life will be like afterwards. Your child
may also have many reactions to their own
illness and sense of their future.
This experience can be called 'anticipatory
grief' which describes the mourning we do
when looking towards a time of loss and
worrying what that will be like. It is also
normal to be grieving a loss of lifestyle and
plans for the future.
How will we cope?
Your family will have their own way of
coping, which is influenced by your
life experiences, values, family supports
and your child’s illness. It is important to
remember that you do not have to manage
everything on your own.
Your care team are available to support
your family through the emotions you may
be feeling and can also provide practical
support related to employment and
financial concerns. Your care coordinator
is there to support you, so speak to
them about arranging local support for
your family.
Over time, it is normal to experience
a number of different and even
conflicting feelings, including sadness, anger,
denial, fear, blame and guilt. There will
also be times of joy and happiness with
positive experiences.
It’s important to remember each family
member will have different ways of
responding and behaving. Some may
keep themselves busy, as a distraction
from the progression of their child’s illness
whilst others may isolate themselves. It is
important to accept each family member’s
way of coping, even if it is not clearly
understood by the rest of the family.
Some people will find comfort in sharing
their feelings, hopes, wishes and concerns
with a trusted person. Others may be afraid
of being overwhelmed by their feelings and
choose not to express them. Both ways
need to be respected. If people have
concerns about themselves or someone
they care for, it may be helpful to speak
to a health professional.
Spending time with each other, enjoying
activities and communicating your individual
coping needs to each other is important.
Palliative care may last for some time and
not every moment needs to be spent with
your child. A trusted relative or friend may
be prepared to stay with your child to allow
you to spend time with your family and
friends or to catch up on tasks or sleep.
“…endless nights of thinking, how are we ever going to get through this?”
16 Paediatric Palliative Care — A Family Companion
‘Nurse’ by Charles
What do we tell people?
The decision of what to say and who to tell
about your child’s life-limiting illness will
be different for each family. Some families
may decide to tell only a small group of
close friends and family, while others will
tell the majority of their contacts and
welcome the community support this can
bring. Your relationships with your family,
friends and community will help guide you in
this decision and it is important to remember
that it is your choice who you share any
information with.
One strategy that families may find helpful is
to ask a trusted friend or relative to contact
other people you have identified to let them
know about your child’s life-limiting illness.
If you decide to inform people this way,
it may be worth discussing with your friend
or relative whether you would be happy for
people to contact you after they hear the
news or whether you would prefer to reach
out to them when you are ready.
Do we tell our other children?
Hearing the news that your child has a
life-limiting illness that will shorten their
life is devastating. Dealing with your
own feelings, as well as coping with new,
challenging and practical matters can be
difficult and the thought of sharing this news
with your children can be overwhelming.
Many parents worry about how they can
share their child’s diagnosis with their
other children and worry about how
they will react. You may want to protect
them from the truth and might not feel
emotionally strong enough to say the words
you need to, or worry about crying in front
of your children. You may be concerned
about using the right words to describe
what is happening to their brother or sister.
Often there is so much happening at
this time. Giving as much attention as you
can to all your children will help to reassure
them and if they know what’s going on,
it’s easier for them to adjust to changes in
family life. These are all normal feelings and
you might find some of your fears start to
fade when you have started opening up to
your children.
Children have limited 'sad time' and it is not
uncommon for children to go out and play
after they have received sad information.
This response is normal and children will ask
more questions when they feel ready.
17palliativecare.org.au/children
Below are some practical tips to guide
communication with your children and give
your children the clear message that they are
a valued part of your family.
› Ask your children what they understand
is happening
› Give your children information gradually
and repeatedly
› Answer the questions your children have
› Be honest
› Be careful not to overwhelm your
children with too much detail
› Involve your children in decision making
as much as possible
› Reassure your children that the situation
is not their fault
› Do not be afraid to show your children
how you feel. Show your children that
it is okay to express their feelings by
showing yours
Should we expect any changes in behaviour in our children?
Your child with a life-limiting illness
may experience anger, fear, confusion
and/or sadness. These feelings may be
in response to their illness, the limits it
places on them or could also be due
to some medications which can cause
behavioural changes. If you do notice a
change in your child’s behaviour let your
care team know as things like irritability and
being withdrawn can also be due to pain or
other symptoms.
On hearing the news or having their
suspicions confirmed about their brother or
sister’s health, siblings react in different ways
depending on their age and personality.
Some become quiet and want to be by
themselves, some ask if they can go out
to play, others get very upset and cry or
get angry. Negative changes in behaviour
may make parents feel that they have done
the wrong thing, however it is normal for
things to get worse in the short term and
then get better.
Many children respond well to
creative outlets as they can help
your child to express their emotions.
Social workers, occupational therapists
and music/play/life/art therapists can work
with your children in the hospital or at your
home to encourage your children to process
and express their feelings. Social workers
can also provide the whole family with
emotional support and assist people to
access counselling.
How do we manage financially?
While your child is receiving palliative care,
you may find it harder than usual to continue
your normal working hours. This may impact
your family income and combined with
the costs of living, may create financial
difficulties for families.
“How can we best support our other children?”
18 Paediatric Palliative Care — A Family Companion
Many families are reluctant to seek
financial help, yet at this difficult time it
is important to reduce other stresses and
allow you to focus on your child and family.
There are services which can help with the
costs of caring for your child.
Ask your care coordinator about which
members of your care team can help you
access financial assistance as the below
options may be available to you:
› Centrelink benefits or carer's allowance
› Financial assistance for bill payments or
food vouchers
› Income protection insurance claims
› Superannuation advances
› Other financial support services including
equipment programs, transport services
and accommodation services
Additional information is also available from: Carers Gateway (carersgateway.gov.au/money-matters or 1800 422 737) — Carers Gateway is a national service funded by the Australian Government. Carers Gateway includes a website and phone service for carers to access practical information and support, including money matters (e.g. payments for carers, carer cards and concessions).
For additional information please see the factsheets:
− Sibling support − Looking after yourself − Looking after your partner − Supporting someone who is caring for a seriously ill child
− Spiritual, religious and cultural wishes
Family, friends and our community
How can we help people understand what we need?
Often people do not know what to say or
do so they may not do anything and wait
for you to reach out to them. This can
leave your family feeling isolated and can
find it difficult to ask for or accept help.
Family members, friends and community
members can provide support to you and
your family. You may like to talk to them
about what would be helpful so they can
give you the support you need.
The way others react to your situation is not
always predictable and may surprise you.
Some people may not know what to do
or fear saying or doing the wrong thing.
By communicating with them, you can give
them practical ideas or set boundaries to
help you. Some suggestions include:
› Be specific about what you and
your family need and don’t need,
e.g. “We have enough food thanks,
but we’d love if you could take the dog
for a walk or pick up our other children
from school.”
› Write a list of practical ways people can
help you
› Contact them and let them know what
you need
› Give them some information about your
child’s illness or whatever you’d like
them to learn about
19palliativecare.org.au/children
It may be useful to have a roster to assist in
coordinating the help provided by friends
and family. A roster can help you identify
tasks you would appreciate some assistance
with and could include meals, transport and
household chores. To reduce the number of
things you have to do, it may be helpful to
appoint a trusted friend or family member to
coordinate the roster on your behalf.
What do we do about school?
Aside from family, school can be a significant
network in your child's life. You may need
to consider the role you wish the school
to play throughout your child's illness and
how much you want the staff and school
community to know.
Continuing to attend school in some
capacity for as long as possible provides
benefits for your child and family, as it can
nurture your child’s social and emotional
wellbeing and provide a routine and
sense of normality. There may also be a
possibility of extra supports being provided
by the school to support your child’s
continued attendance.
If your child is well enough, school can
give your child the opportunity to maintain
friendships and continue learning. Even if
your child is not well enough to attend for
a whole day, they may be able to attend for
their favourite class or at lunch time to see
their friends.
If your child is not well enough to go to
school at all, your child's friends may be
able to visit or write a card. Your child's
teacher can also suggest other ways to
continue friendships. Their education may
continue through home schooling support
services or hospital schools for as long as
they are well enough and enjoying it.
It is important to keep your child's teacher
informed, as well as the teachers of your
other children with as much information as
you feel comfortable with. If teachers are
aware of what is happening, the school
can offer emotional support. They will
also be aware of the need for days off and
extra days to complete any homework.
You can say what level of confidentiality
you want kept and the school should check
any communication to others about your
child with you.
Many families feel comfortable talking
to their school on their own but if you
would like support, your care coordinator
can organise someone to be with you.
Often teachers welcome the opportunity to
speak with health professionals, which can
be a visit or a phone call, as they can answer
any questions the teacher and broader
school staff may have and offer suggestions
for supporting your children, their friends
and the school community.
What about work?
Your workplace can be a place of support
to you and your family and will probably
be understanding and flexible if you need
to reduce your hours or take leave. It is
generally preferable to let your employer
know about your situation and discuss what
options are available. This may include
modifying your hours or accessing an
employee assistance programme. It is your
decision what information you choose to
share with your colleagues. Some parents
choose to keep their situation private
whilst others find it helpful to confide in
their colleagues. Your care coordinator
or General Practitioner can help support
you to provide supporting documentation
as required.
20 Paediatric Palliative Care — A Family Companion
Additional information is also available from: Carers Gateway (carersgateway.gov.au/working-while-caring or 1800 422 737) — Carers Gateway is a national service funded by the Australian Government. Carers Gateway includes a website and phone service for carers to access practical information and support, including information about working whilst caring (e.g. talking with your employer, employers of carers).
For additional information please see the factsheets:
− Supporting someone who is caring for a seriously ill child
− Siblings support − Spirituality, religious and cultural wishes
“We knew when something felt right for us.”
‘Boo
k
Bunke
r’ by M
arlie
21palliativecare.org.au/children
End of life and bereavement
This section explores end-of-life care choices, talking to children, making memories, what to do at the end of your child’s life and bereavement support. It describes ‘end of life’ as the last few days or weeks of life, which is also sometimes known as “terminal care”. Bereavement is the help with the process of grieving and the support you may require.
What are our end-of-life care choices? While there are many things that cannot
be controlled, there are important choices
that can be made about the care of a child
with a life-limiting illness. Planning ahead
can help to ease stress as you know what
to expect and how you will be supported,
it also means that you won’t have to
make difficult choices if your child were to
deteriorate suddenly. This may be known as
advance care planning and whilst a member
of your care team will generally approach
you about it, you may need to signal to the
team you are ready to talk about some of
the more difficult aspects of the illness.
You may want to speak to your child about
what is important to them and what are
their hopes and their worries. Even if your
child is very young, it may be helpful to think
what they might say if they could speak
for themselves. Talk together as parents
and even if you don’t always see things the
same way, it is important to respect each
other’s views and continue talking. You may
also want to seek support from family,
friends or your community and, if you would
like to, you could ask if they can be included
in discussions with the care team. Your care
team will provide recommendations on the
best approach based on their knowledge of
the disease and likelihood of improvement
with various possible interventions.
Decisions and plans can be reviewed at a
later date, if this is something you would like
to do speak to one of your care team.“We mostly felt torn — hoping for the best while preparing for the worst.”
22 Paediatric Palliative Care — A Family Companion
What does “withholding treatment” mean?
It is important to know that ‘care’ is never
withheld and your child will always be
cared for. Providing the best care means
thinking about which treatments will help
your child and which treatments could
hurt them without providing any benefit.
When it is agreed that a certain treatment
will do more harm than good, this treatment
should be withheld (not started) or
withdrawn (stopped). These decisions are
made by you and the care team together.
Treatment for discomfort, pain management
and other symptoms will always be provided
for your child.
A member of your child’s care team will
discuss with you the options available if
your child’s condition does deteriorate.
Depending on which state or territory your
child is receiving care in, these decisions may
be documented as:
› Goals of Patient Care (GoPC)
› Allow Natural Death (AND) order
› Advance Care Plan/ Directive
› Do Not Resuscitate (DNR) order
› Do Not Attempt Resuscitation (DNAR)
› Resuscitation and End of Life Care Plan
Once you and the care team have
made decisions, it should be recorded in
your child’s medical notes by a member of
your care team. Treatment decisions should
also be recorded in your child’s care plan
and shared with all people caring for your
child so that your wishes are respected.
You can change your mind about this at
any time, however it is important that
you let your care coordinator know if and
when you do. If your care team considers
an intervention or procedure to not be
beneficial to your child, they will discuss
this with you and work towards a new
agreed plan.
Considering organ and tissue donation
You can ask your care coordinator for
information about organ and tissue donation
at any stage throughout your child's illness.
If your child has had a long-term illness,
it may not be possible to donate major
organs but tissue donation may still be
an option. It is important to let your
child’s care coordinator know that you are
considering this option as there are specific
processes that will need to take place.
What do I need to know about end-of-life care?
Parents usually wish to be prepared and
want to know what to expect, but at the
same time, they do not want to know,
or may be too frightened to ask. Talking or
reading about how your child may die and
what to do at the time will be terribly sad
and painful. However, discussing what will
happen at the time of your child’s death
may help to alleviate some of your fears
and concerns. You can use the following
questions to help you think about it:
› Who do you want to have with you?
› Who will take care of your other children
if they are not with you?
› Which health professional will you call?
› Who will make the calls to other people?
23palliativecare.org.au/children
Some parents find it helpful to know what
physical changes to expect in the last days
and hours of their child’s life. For detailed
information on what to expect please refer
to page 28 or the factsheet on What to expect in the final days. Please note this
information may be difficult to read but has
been provided to hopefully reduce your
fears about the last days and hours of your
child’s life.
For additional information please see the factsheets:
− Where will my child be cared for − Decision making − What to expect in the final days − Looking after yourself whilst caring − Helping your partner
How do we talk to our children?
How do children understand death?
It is hard to divide children's understanding
of death into age groups because children
have different life experiences. Children may
have had a family member, friend or pet
die whilst others have had no experience
of death. This will have an influence on their
understanding of what death is.
It is important not to make assumptions
of what your children's understanding
of death is. You may be able to gain an
understanding of what they think death is
and why it occurs by listening and talking to
them about it.
In general:
› Children aged 0–2 years understand
'here' and 'not here' and whilst
they can sense loss they cannot
understand death.
› Children aged 3–5 years see death
as temporary and expect the person
to return.
› Children aged 6–10 years understand
death is forever and there are different
causes of death. They may be curious
about death, funerals and cemeteries.
› Children aged 11 and older start to
perceive death as an adult would.
They may look for the meaning of death
and ask more questions. Children with a
life-limiting illness and their siblings are
more aware of death. They often have a
greater understanding of death due to
exposure to hospitals and care teams.
Do we tell our sick child?
Many parents struggle with the decision on
whether to tell their child they are dying.
Your decision to talk with your child about
dying and death may be guided by:
› Your own instincts
› Your knowledge of your child
› Your child's condition
› Your cultural, religious and
spiritual beliefs
› Your child’s questions
Children who know when they are dying
can have time to prepare, share and
create memories. This also gives you and
your child some time to say goodbye.
24 Paediatric Palliative Care — A Family Companion
Children who are very sick often observe a
change in behaviour in those around them.
They also notice changes in their own body
and see what happens to other children
with similar illnesses. Even when the people
they love try to protect them, they generally
have some information. They may not
always make sense of this and this can leave
them frightened and feeling alone. On top
of this, they may not want to worry their
parents and it can be hard to know how to
help them.
Some families find it helpful to give their
child some basic information and then say,
‘If you ever want to ask us any questions,
we will be very honest with you.’ This gives
the child control over what they want to
know and when. It also lets them know that
if they ask, the response will be honest.
You can ask your care team for advice and
support and they can help you speak to your
child if you wish. Make sure your care team,
family and friends are aware of your decision
about what your child knows.
How do we support our other children?
It is important to create a safe space for
your other children so they know they
can ask questions. Your other children
may like to be with you, to talk and touch
their brother and sister, to cuddle them,
read a story, draw and say goodbye in their
own way. Below are some suggestions based
on the experiences of other families that
may be of assistance:
› Involve your other children as much as
their age allows
› Provide clear information about what
is happening by using simple and
honest language
› Try not to have particular expectations of
how your children may react
› Offer encouragement and support them
to react in their own way
› If your child does visit their sibling,
it is important to prepare them for
any physical changes their sibling
has experienced
› Give your children a time to
say goodbye
› Talk to your children about what they
can expect when your child dies and at
the funeral
› Be prepared for any questions your
children will ask
› It may be helpful to ask a trusted
relative or friend to spend time with
your children
You can also ask your care team for
advice and support when talking to your
other children.
“Our ultimate goal became to help our daughter die well and to help our son survive as a whole person.”
25palliativecare.org.au/children
“How do you know when the time comes?”
Grandparents
When a child is dying or has died,
grandparents are deeply affected by
both the death of their grandchild and
the deep distress of their son or daughter.
Many grandparents look after their
grandchildren and the child’s death may
mean a huge change in their daily life.
Their grief is often overlooked and they
will need support too.
For additional information please see the factsheets:
− Spiritual, religious and cultural wishes − Sibling support − Siblings and grief − Looking after yourself whilst caring − Helping your partner
What can we do about memory making?For most families, the focus is ensuring their
child is free of pain and distress and this
can provide an opportunity to do whatever
the child's health allows. Often there is a
sense of wanting to make the most of life
and to experience good days as defined by
the child.
Some children and families have specific
requests. Each family's wishes are unique,
but common requests include:
› Bringing the child home
› Going on a special outing or holiday
› Spending time with friends and
extended family
› Taking photos together as a family
› Making handprints and footprints
› Recording special times through video
or a journal, this may include recording
their height, weight and any other
details you want to remember
› Keeping a lock of hair
‘Hand-painted chooks outside the chook-house’ by Nicholas, 7 years old
26 Paediatric Palliative Care — A Family Companion
Does it help to do some funeral planning?Some families find comfort in planning
their child's funeral ahead of time because
it stops them worrying about forgetting
details or making choices. Others feel it is
something they can't think about until after
their child dies.
A funeral is a time to honour your child
and celebrate all the wonderful things
about them. It is a time to share their
story, your memories and sorrow and an
opportunity to say goodbye with family
and friends. It is important to say goodbye
to assist with your grieving and provide
an opportunity for your healing journey
to begin.
Planning can be helpful to understand
funeral costs and what services can
be provided. You may wish to speak with a
number of funeral directors before deciding
what is comfortable for you. Funeral costs
can vary considerably and it is important to
know what services you will receive and how
much each part will cost. You may wish to
obtain a written, itemised quote to help you
make a decision.
If your older child knows they are dying,
they may find it a positive experience to
plan their own funeral. Your child might
also choose to include their siblings in their
funeral planning.
A funeral can be a time to celebrate your
child's life and attend to important cultural,
religious and spiritual rituals. Take the
time you need to plan your child's funeral
and make it as personal as you would like.
Personal touches may include:
› Your child’s favourite songs and music
› Photos and videos
› Flowers, balloons, candles or other items
If you are uncertain whether you would like
your other children to attend the funeral it
may helpful to let them decide. Letting them
be involved in this decision may help in their
adjustment to the death of their brother or
sister but is important to let them know what
to expect and how they might participate in
the funeral.
For additional information please see the factsheet:
− Selecting a funeral director
How do I know when the last hours or days are near?There are many signs you might see or feel
as your child approaches their last days
and hours, these include:
› Changes in body colour,
with pale/bluish hands, feet and lips
› Cooling of hands and feet
› Interrupted, irregular and/or
noisy breathing
› Restlessness or unsettled behaviour
› More time spent asleep
› Loss of appetite and thirst
› Incontinence or strong urine
› Sunken or glazed eyes
27palliativecare.org.au/children
Spiritually, you may also sense that your
child's death is approaching and you may
feel the need to be close to them. You may
also choose to involve other family members
and friends at this time.
Even when sleepy, your child can still
hear and feel so you should talk to them,
cuddle them or play their favourite music.
At the time of death, some muscles will
relax, facial features will relax, and there
may be a bladder or bowel movement.
There may also be some small fluid loss
from the mouth or nose. Being aware of
this will help you prepare for these changes.
Many parents comment on how peaceful
and beautiful their child looks.
You may touch your child as much as you
like after they have died. You may wish to
prepare your family for how your child will
look once they have died. The following
changes occur:
› Their skin colour becomes pale
› Their skin can look bruised
› Their body may feel cool and clammy
to touch
› Their body may feel stiff
For additional information please see the factsheet:
− What to expect in the final days — please note, this factsheet provides detailed information that may be difficult to read.
What do I do after my child dies?After your child dies, it is important to take
the opportunity to spend time with them as
there is no need to rush. This is your time
to be with your child and to say goodbye
for as long as you need. If you wish, you can
just be with your child, touch, hold or
cuddle them. You may wish to wash, dress or
just spend time with your child by yourself or
with family and friends.
Contact your care coordinator if you are
unclear about any of the steps listed below
or if you need extra support.
If your child dies at home
If your child dies at home, these are the
things you need to do when you feel ready:
› Phone your care coordinator or the
person nominated as your after-hours
contact to let them know. They will then
lead you through the next steps.
› A doctor or specialist nurse will come
to your house and certify in writing
that your child has died. At this time a
medical certificate of cause of death may
be written by the doctor attending or it
may be done the next working day.
› When you are ready, contact a funeral
director who will come to your home.
Let them know if you would like to
keep your child's body with you or at
the funeral home. The funeral director
will organise transport, if required and
negotiate the timing of this with you.
› Generally there is no need to call
emergency services as there will not be
a need to notify the Coroner or Police.
The health care professional attending
will confirm this for you.
28 Paediatric Palliative Care — A Family Companion
If your child dies in a hospital or hospice
If your child dies in a hospital or hospice,
there are certain processes that will need
to take place when you are ready. The care
team are there to support and assist you,
if you wish. When you are ready, a funeral
director will need to be contacted to
make funeral arrangements, as well as
transport your child’s body and collect the
necessary paperwork.
If you have not yet chosen a funeral director,
your child's body can remain in the care of
the hospital or hospice. If you would like to
take your child's body home for a last visit,
this may be possible and you can arrange
for the funeral director to collect your child's
body from the home when you are ready.
Leaving the hospital or hospice without your
child can be overwhelming and emotional
for the whole family. The staff will be there
to support you but you may also want the
support of loved ones at this time.
Post-mortems, autopsies and organ/tissue donation
You may request a post-mortem (autopsy)
or biopsies if you feel it would be helpful
to understand your child's illness and cause
of death. Your care team may also ask
you to consent to a post-mortem and/or
biopsies for research or teaching purposes.
It is your choice whether you would like a
post-mortem or biopsies.
If you have chosen organ or tissue
donations, speak with your care team to
discuss the next steps.
If you are not sure about what you need to
do or the choices you need to make, talk to
your care coordinator.
Coroner’s notification
In some circumstances it may be necessary
to notify the Coroner of a child’s death.
Ask your care coordinator if this is likely for
your child and what it will mean for you.
Telling others
There are often a lot of practical issues
to deal with following your child’s death.
There may be other people and
organisations that may need to be notified
however you may want to arrange a
trusted relative or friend to help you with
these tasks.
Some of the people and services your care
team will help to notify include:
› Your family doctor
› Department of Human Services
(Medicare and Centrelink)
» You may be eligible for a
bereavement payment
› Your private health fund
› Other health professionals
(e.g. dentist or optometrist)
› Any service where you may receive an
appointment reminder
› Your bank
› Your child's school
› Recreational clubs (e.g. sports clubs or
the library)
› Religious, cultural or social organisations
For additional information please see the factsheets:
− What happens if my child dies at home − Selecting a funeral director − Spiritual, cultural and religious wishes
29palliativecare.org.au/children
How will I respond?No one can anticipate how they will feel or
react after the death of their child and no
one can prepare you for how you will grieve.
Parents and families often report feeling
overwhelmed and experience intense and
unfamiliar feelings. Initially people may
struggle to believe their child has died and
many parents report they do not know what
they need or what might help. It is important
to get rest, eat well and get some exercise,
even if you don’t feel like it.
‘Butterf ies’ by Naomi, 8 years old
While painful, grief is a normal expected
process that can include a range of reactions
and changes in our emotions, behaviours,
spirituality and bodies.
There is no right response to death or
right way to grieve. Grieving can last a
long time, and for many, may not come to
an end. It may help to know that your grief
will become less raw over time. You will
never forget or stop missing your child,
but in time, you become better at living
with the loss.
30 Paediatric Palliative Care — A Family Companion
Common reactions to death
Below are some common reactions to death:
Emotional › Anger
› Confusion
› Crying
› Denial
› Distress
› Fear
› Guilt
› Helplessness
› Loneliness
› Numbness
› Panic
› Relief
› Shock
› Stress
Physical › Body aches
› Discomfort
› Dizziness
› Insomnia
› Headaches
› Hot or cold flushes
› Lack of concentration
› Nausea
› Shaking
› Sweating
› Tiredness
› Trembling
Social / behavioural › Avoidance of or needing
to be with others
› Don’t want to get
out of bed
› Feeling isolated
or detached
› Loss of or extra appetite
› Loss of or extra interest in
being social
› Loss of or extra interest
in hobbies
Spiritual › Feeling a sense
of emptiness
› Feeling out of control
› Loss of direction
› Loss of joyfulness
› Loss of meaning
and purpose
› Questioning or affirming
religious beliefs
“How will our family cope with our loss and grief?”
‘Butterf ies’ by Naomi, 8 years old
31palliativecare.org.au/children
Some things that might help
When you are grieving it is important to look
after yourself, this may include:
› Get as much rest as possible
› Gentle movement or exercise
› Slow down and give yourself permission
to let go of some of your responsibilities
› Being gentle with yourself and taking
time out to do things you like
› Accepting help
› Keeping a journal or diary
› Give yourself permission to grieve and
be happy sometimes
› Creating a memory book or box for
special belongings and photos
› Giving yourself time to talk and share
your feelings
› It can help to prepare ahead for some of
the questions people may ask
How do I get bereavement support?Bereavement support is help with
the process of grieving. Grieving is
the expression of loss when someone
dear to you dies and may also be
experienced beforehand.
There is no ‘right’ way or time to grieve.
Many people find additional support and
counselling can be helpful at this time.
If you are concerned about yourself or
someone you care for, it is advisable to
contract a health professional and discuss
your concerns.
Everyone in your family will be grieving in
their own way and may have less capacity to
provide the comfort their family members
need. Close friends and family members may
be a good source of bereavement support
for the whole family. There are also many
people, support groups and other resources
that can help, including:
› Pastoral care workers
› Community-based support groups
› Church-based support groups
› Hospital or hospice-based
support groups
› Professional counsellors
› Internet-based support groups
“…endless nights of thinking, how are we ever going to get through this?”
32 Paediatric Palliative Care — A Family Companion
How might my other children respond?
A brother or sister’s reaction to the
death of their sibling will be unique
and is greatly influenced by their age,
developmental stage, personality and
the family, cultural, religious and spiritual
influences in their lives. Children’s grief can
vary significantly from adults and often will
have three main concerns:
› Did I cause the death?
› Will I die?
› Who will care for me?
Speaking in an open, honest and age
appropriate way with children can help them
cope better with their loss. Children need
time and to feel safe in order to express
how they are felling. Be prepared to revisit
conversations a number of times, as children
need time to process information.
Reassure them that grief is normal and it is
okay to be upset about what has happened.
For additional information please see the factsheet:
− Siblings and grief
How do I readjust to my changed life?
Making memories and marking occasions
There are no rules about anniversaries,
birthdays and special days. What you regard
as a special occasion will be unique to you
and your family. Whatever you decide,
do whatever is helpful and meaningful to
you and your family. Grief can be heightened
by anniversaries, special occasions or
something unexpected however this
is normal.
Some suggestions from other families to
honour your child’s memory include:
› Keep a journal to record your thoughts,
feelings and memories with your child
› Write or share the story of your
child’s life
› Make a photo album
› Create a memory box to put all your
special keepsakes in (e.g. toys, clothes,
cards and letters)
› Display special artworks around
your house
› Compile memories of your child from
family and friends
› Create a special space, corner or garden
where you can go to reflect
› Adopt a star in honour of your child
› Use your child’s clothing to make a
memory quilt
Some suggestions from other families to
mark special days include:
› Add a special plant to your garden or at
your child’s gravesite
› Make or buy celebration candles
› Write a poem, song or letter to
your child
› Make a special Christmas decoration
› Browse through a photo album or watch
a video of your child
› Place a message in your local newspaper
› Hold a memorial service
› Visit the gravesite with flowers, balloons
or a picnic
33palliativecare.org.au/children
“People who love each other are always connected by a very special string made of love. Even though you can’t see it with
your eyes, you can feel it deep in your heart, and know that you are always connected to the ones you love”.
— The Invisible String, Patrice Karst
Returning to work
It can be difficult to go back to work, but it
can also be a healthy escape for you. Have a
talk with your work place and decide how,
or whether you would like to share your loss
with your colleagues. In returning to work,
you may wish to consider:
› How many hours a week you would like
to work
› Flexible working hours
› What to do if you’re having a bad day
and can’t be at work
› Whether you are happy for people to
speak to you about your child’s death
› Options to work from home, if possible
› Your financial needs
You may like your care team to assist you
with these discussions by attending with you
or helping you to prepare.
Deciding on another baby
It is normal for parents to have doubts and
uncertainties about having another baby
after their child has died. If you are thinking
about having another baby, it may be worth
considering the below points:
› It may take time for you and your
partner to agree on whether to have
another child
› It is important to discuss your feelings
openly and honestly
› Respect and acknowledge your
partner’s feelings
› Be prepared to answer any questions
your other children have
Many parents also worry that they may pass
on a life-limiting illness to their children.
If you are concerned about a condition
or disease running in your family,
speak to your General Practitioner
about it, who may suggest you consider
genetic counselling. Genetic counselling
is provided by a number of professionals,
including Clinical Geneticists and
Genetic Counsellors. The genetic
counselling team can provide advice and
support about your risk of another baby with
an inherited condition. They may speak to
you about specific tests that you and/or your
partner could have to determine if you could
pass on a genetic condition to your children.
34 Paediatric Palliative Care — A Family Companion
Other organisations and support
ParentsAustralian Centre for Grief
and Bereavement
Australian Centre for Grief and Bereavement
provide information including a pamphlet
— “After the Loss of a Child. A resource
for parents of children in palliative care”.
grief.org.au
beyondblue
beyondblue provides information and
support to help everyone’s mental health
and improve the lives of individuals,
families and communities affected by
anxiety, depression and suicide.
beyondblue.org.au • 1300 224 636
The Compassionate Friends
The Compassionate Friends is a world-wide
self-help group for parents that have lost
a child of any age and through any cause.
They offer support and understanding
thecompassionatefriends.org.au/contact
Griefine
Griefline provides a dedicated grief helpline
service providing counselling support
services free of charge
griefline.org.au • 1300 845 745, 12pm–3am
Lifeline
Lifeline provides access to a 24 hour crisis
support and suicide prevention for anyone
experiencing a personal crisis.
lifeline.org.au • 13 11 14
National Association for Loss and Grief
National Association for Loss and Grief
(NALAG) provides free loss and grief support
to those who are grieving, either face to face
or via telephone.
nalag.org.au
Red kite
Provides information and emotional and
financial support to parents and families
whose child has cancer.
redkite.org.au
Red Nose Grief and Loss
Red Nose Grief and Loss services are
available to anyone who has experienced the
sudden and unexpected death of their baby
or child during pregnancy, birth, infancy and
early childhood.
rednosegriefandloss.com.au
Relationships Australia
Relationships Australia provides of
relationship support services for individuals,
families and communities.
relationships.org.au • 1300 364 277
35palliativecare.org.au/children
ChildrenCanteen
Support for siblings 12–25
who have a sibling affected
by cancer. Provides information,
online resources & support.
canteen.org.au
Headspace
Provides early intervention mental
health services for 12–25 year olds.
headspace.org.au
Kids Helpline
Kids Helpline provide free, private and
confidential 24/7 phone and online
counselling service for young people aged
5 to 25.
kidshelpline.com.au • 1800 551 800
Siblings Australia
Siblings Australia is a national organisation
committed to providing support for
brothers and sisters of people with
special needs; including disability,
chronic illness and mental health issues.
They provide workshops, print and
web-based resources and networking
opportunities for families and providers
across Australia and overseas.
siblingsaustralia.org.au
‘Superhero Siblings’ by Alex, 9 years old
36 Paediatric Palliative Care — A Family Companion
‘Superhero Siblings’ by Alex, 9 years old
About this resource
Palliative Care Australia has collaborated
with Paediatric Palliative Care Australia and
New Zealand and the families they have
cared for to develop resources to support
the parents, children and families who
come into contact with palliative care. Our
aim is provide practical information about
paediatric palliative care so people have
some information to assist them to think
about what may lie ahead following the
news that their child has a life-limiting illness.
The artwork used throughout this resource,
and on the website (palliativecare.org.au/
children) were created by children involved
with the paediatric palliative care teams
around Australia. Palliative Care Australia
would like to thank all of the children,
their families and the art therapists for
their contributions. All of the artwork
that was received as part of this project is
available to be viewed on the gallery page
on the website.
If you have any thoughts or feedback
about this resource please contact
Palliative Care Australia either via the
feedback page on the website or via email